Life on TPN
I realise I was a bit vague in my last post but this entry deserves a little time to write without distraction.
I commenced TPN (intraveous feeding) on the 12th June and since then I have been testing my feet in this new world. In just under 3 months, I have gained back 11kg and for the first time since my journey started over two and a half years ago, I'm a stable healthy weight.
Initially, when TPN was mentioned as the next step for me... I panicked! Like anyone would I guess. I saw it as a sign of things getting worse and found it hard to stay positive during that time. Then, things got so bad I stopped looking at it as "as sign of getting worse"... there was no worse anymore... I felt so ill I didn't care what any of it meant as long as it kept me alive. I realised that this was the only thing that would stop me from starving! (Yes I know thats the purpose of it lol. It just took me a while to realise that!)
Accepting it was only half the battle though. First we needed to find a parental nutrition team to take me on! In a perfect world...it shouldn't have been a problem. Your consultant decides you need treatment, you get it right?...life is not perfect and that's not how it works at all. My GI had a very hard job getting someone to take me on. My impression was, that they all wanted to do their own adjustments to my treatment plan before heading off down the TPN route. Theres nothing wrong with that as such... I totally understand that they wanted to make sure for themselves that this was the best option...after all, its a pretty big step. They don't know me as a patient... I'm just a piece of paper to them at this point and on paper I'm guessing that most physicians see gastroparesis as a mild complaint... surely there is another way... and so it goes on....for another couple of months!
Then... I get an email from my consultant... the best email I could have wished for... I've found you a Dr and she gets it! WOW at last we have made progress. He said she would be in touch with me once he had sent over all my notes etc.... I didn't have to wait that long, she rang me the next day to arrange admission....he was right, she got it lol.
I spent the next 4 weeks in hospital while they placed my Hickman line, a new NJ tube for meds and got my prescription stable. By the time I was ready to come home I was already feeling stronger than I had in a very long time.
Over the last 2 months I have been learning to live again! I have a strict regime to follow and I still can't eat or drink but now I can live my life without these things and live to tell the tale! I hook up to my drip stand at 8pm every day and by 8am I can remove the attachments and forget about it until the evening comes round again. To many people, being attached to a drip sounds pretty limiting. In reality, it gives me more freedom than I've had in a very long time. Since october 2011 I had been attached to a jejunal feed pump for 24hrs a day and in constant pain as a result. Towards the end I was getting as little as 360kcal a day and having to go to an IV clinic twice a week because I was permanently dehydrated. NOW I get 1600kcal in 2 litres of fluid every day... no more IV clinic, no more needles, no more starving and most importantly... I fit into my wardrobe again!!!
It does bring it's own set of little challenges... like my living room looking like a hospital, having a curfew, and going away brings a whole host of headaches. However, when I came home from hospital, I made a decision that I would not allow anything to stop me from achieving my goals. I feel like I've been given a chance to make a difference and that's exactly what I intend to do!
My first adventure away was a big learning curve in itself! We have been so disjointed as a family throughout this whole journey that we decided to take the children away for an activity weekend. We wanted to build some bridges and get us all working as a team again. We went to an outdoor activity centre where they are used to catering for people with medical needs. The point being that we wouldn't have to worry about having the right facilities to store my TPN because they provided everything needed and they would find activities suitable for all of us. We thought this would be the safest option since it was my first trip away and I don't exactly travel light anymore!
We arrived on saturday and were due to come home on monday. On sunday, we did archery followed by canoeing in the afternoon... doesn't sound like the best idea for someone with a hickman line but the children really wanted to do it and they had a rig of two canoes bolted together so they couldn't capsize...problem solved! The children were smiling from ear to ear the whole time!
Then... we had a crisis, we got back to the centre and I checked the fridge...oh ooohh, it was warm! There was no way I could use the bag because I couldn't be certain it was going to be safe, it had been packed in freezer blocks for the journey and then left in a warm fridge for well over 24hrs... my theory, if in doubt leave it out! I hadn't even thought to take any back-up IV fluids so we were left with a little dilemma! The nearest A&E was a 45 minute drive away and I really didn't fancy dragging the kids to yet another hospital to sort it out, it was late and we would have been out all night. By the time we drove there and back we could be home and sorted never mind the wait in A&E. So after a lot of debating we decided that the safest option would be to cut the trip short and get home. Once again I felt the guilt... one emotion that never leaves you, no matter how long you have been ill.
You can't keep beating yourself up over these things though. It's not what you do that counts, its how you deal with it that matters! So we took the positives, made some memories, overcame our first hurdle and achieved something that was simply not possible a few short months ago. We also decided that we would not let it stop us, all we need is practice so we will just have to do it all again until we get it right!... Our next adventure? Its ambitious considering... HONG KONG here we come! No, I'm not bonkers, my brother is moving there for a new job so that's my new goal... you know I like a challenge!
My most recent consultation was a a far cry from the last one! It felt so good to be able to walk in with a smile instead of a grimace and genuinely say... I feel MUCH better! He was really pleased with how things are going and gave me another piece of good news. I could stop taking most of my medication because I'm not using my digestive tract anymore. This in turn meant that I could remove my NJ tube too!!!! I was so excited at the thought of being free from the face jewellery that I probably didn't think it all through properly at the time, all I heard was tube free...oh yeah! My goal for my next appointment... go out and be naughty for a while! Now that's my kind of target hee hee.
Like I said, I didn't entirely think this whole medication thing through... I stopped all my meds straight away as none of them needed weaning. I was fine the first day. The second day was harder... and then I really didn't feel too good! So I had to jiggle things round a little to figure out which ones I needed and which ones I can live without. Then came the realisation that I don't have a direct route anymore, so I'm running the daily gauntlet... will it stay put or won't it! I've been in touch with my GP to see if they do them in an orodispersible preparation but they don't. So we changed a higher dose twice a day instead of the low dose three times a day. It's not ideal and its still hit and miss whether I get an effective dose or not but that's the only thing we can try. As a result, I am quite up and down with my pain levels again and I really don't look forward to those days where I turn into a moron and actually believe that I can get away with eating that piece of forbidden cake!
This last week has been a reminder of just how awful the situation is. I have had a serious flare in symptoms which has led to a succession of sleepless nights. To add to the aggro I have been getting persistent cramp in my legs and feet. To begin with I just thought it was just one of those things, I have flat feet and have been more mobile recently. However it got worse as the days went on and I now spend every night doing the cramp dance round my dripstand while trying not to get tangled!... Hubby is not impressed with my interpretation of pole dancing!
I have been for a blood test today so I hope that explains it and they can sort it out for me! I also saw my gp, he was much more helpful today and actually sat and went through my notes with me (He was way out of date). I explained everything to him, including who is involved in my care and what their roles are. So now we are both working on the same page at last!
We decided that my recent flare in symptoms could be bacterial overgrowth again (SIBO). For once he didn't question me and handed me a script for some Rifaxamine (antibiotic). He also agreed that it looks like something isn't quite right with the TPN, I had seen him last week and he could see the difference in my face. I was in a lot of pain and struggling not to be sick!
The last few days have been a nightmare but hopefully the storm will pass and I will be able to plan some naughtiness soon!
I will update you once I know whats happening.
I commenced TPN (intraveous feeding) on the 12th June and since then I have been testing my feet in this new world. In just under 3 months, I have gained back 11kg and for the first time since my journey started over two and a half years ago, I'm a stable healthy weight.
Initially, when TPN was mentioned as the next step for me... I panicked! Like anyone would I guess. I saw it as a sign of things getting worse and found it hard to stay positive during that time. Then, things got so bad I stopped looking at it as "as sign of getting worse"... there was no worse anymore... I felt so ill I didn't care what any of it meant as long as it kept me alive. I realised that this was the only thing that would stop me from starving! (Yes I know thats the purpose of it lol. It just took me a while to realise that!)
Accepting it was only half the battle though. First we needed to find a parental nutrition team to take me on! In a perfect world...it shouldn't have been a problem. Your consultant decides you need treatment, you get it right?...life is not perfect and that's not how it works at all. My GI had a very hard job getting someone to take me on. My impression was, that they all wanted to do their own adjustments to my treatment plan before heading off down the TPN route. Theres nothing wrong with that as such... I totally understand that they wanted to make sure for themselves that this was the best option...after all, its a pretty big step. They don't know me as a patient... I'm just a piece of paper to them at this point and on paper I'm guessing that most physicians see gastroparesis as a mild complaint... surely there is another way... and so it goes on....for another couple of months!
Then... I get an email from my consultant... the best email I could have wished for... I've found you a Dr and she gets it! WOW at last we have made progress. He said she would be in touch with me once he had sent over all my notes etc.... I didn't have to wait that long, she rang me the next day to arrange admission....he was right, she got it lol.
I spent the next 4 weeks in hospital while they placed my Hickman line, a new NJ tube for meds and got my prescription stable. By the time I was ready to come home I was already feeling stronger than I had in a very long time.
Over the last 2 months I have been learning to live again! I have a strict regime to follow and I still can't eat or drink but now I can live my life without these things and live to tell the tale! I hook up to my drip stand at 8pm every day and by 8am I can remove the attachments and forget about it until the evening comes round again. To many people, being attached to a drip sounds pretty limiting. In reality, it gives me more freedom than I've had in a very long time. Since october 2011 I had been attached to a jejunal feed pump for 24hrs a day and in constant pain as a result. Towards the end I was getting as little as 360kcal a day and having to go to an IV clinic twice a week because I was permanently dehydrated. NOW I get 1600kcal in 2 litres of fluid every day... no more IV clinic, no more needles, no more starving and most importantly... I fit into my wardrobe again!!!
It does bring it's own set of little challenges... like my living room looking like a hospital, having a curfew, and going away brings a whole host of headaches. However, when I came home from hospital, I made a decision that I would not allow anything to stop me from achieving my goals. I feel like I've been given a chance to make a difference and that's exactly what I intend to do!
My first adventure away was a big learning curve in itself! We have been so disjointed as a family throughout this whole journey that we decided to take the children away for an activity weekend. We wanted to build some bridges and get us all working as a team again. We went to an outdoor activity centre where they are used to catering for people with medical needs. The point being that we wouldn't have to worry about having the right facilities to store my TPN because they provided everything needed and they would find activities suitable for all of us. We thought this would be the safest option since it was my first trip away and I don't exactly travel light anymore!
We arrived on saturday and were due to come home on monday. On sunday, we did archery followed by canoeing in the afternoon... doesn't sound like the best idea for someone with a hickman line but the children really wanted to do it and they had a rig of two canoes bolted together so they couldn't capsize...problem solved! The children were smiling from ear to ear the whole time!
Then... we had a crisis, we got back to the centre and I checked the fridge...oh ooohh, it was warm! There was no way I could use the bag because I couldn't be certain it was going to be safe, it had been packed in freezer blocks for the journey and then left in a warm fridge for well over 24hrs... my theory, if in doubt leave it out! I hadn't even thought to take any back-up IV fluids so we were left with a little dilemma! The nearest A&E was a 45 minute drive away and I really didn't fancy dragging the kids to yet another hospital to sort it out, it was late and we would have been out all night. By the time we drove there and back we could be home and sorted never mind the wait in A&E. So after a lot of debating we decided that the safest option would be to cut the trip short and get home. Once again I felt the guilt... one emotion that never leaves you, no matter how long you have been ill.
You can't keep beating yourself up over these things though. It's not what you do that counts, its how you deal with it that matters! So we took the positives, made some memories, overcame our first hurdle and achieved something that was simply not possible a few short months ago. We also decided that we would not let it stop us, all we need is practice so we will just have to do it all again until we get it right!... Our next adventure? Its ambitious considering... HONG KONG here we come! No, I'm not bonkers, my brother is moving there for a new job so that's my new goal... you know I like a challenge!
My most recent consultation was a a far cry from the last one! It felt so good to be able to walk in with a smile instead of a grimace and genuinely say... I feel MUCH better! He was really pleased with how things are going and gave me another piece of good news. I could stop taking most of my medication because I'm not using my digestive tract anymore. This in turn meant that I could remove my NJ tube too!!!! I was so excited at the thought of being free from the face jewellery that I probably didn't think it all through properly at the time, all I heard was tube free...oh yeah! My goal for my next appointment... go out and be naughty for a while! Now that's my kind of target hee hee.
Like I said, I didn't entirely think this whole medication thing through... I stopped all my meds straight away as none of them needed weaning. I was fine the first day. The second day was harder... and then I really didn't feel too good! So I had to jiggle things round a little to figure out which ones I needed and which ones I can live without. Then came the realisation that I don't have a direct route anymore, so I'm running the daily gauntlet... will it stay put or won't it! I've been in touch with my GP to see if they do them in an orodispersible preparation but they don't. So we changed a higher dose twice a day instead of the low dose three times a day. It's not ideal and its still hit and miss whether I get an effective dose or not but that's the only thing we can try. As a result, I am quite up and down with my pain levels again and I really don't look forward to those days where I turn into a moron and actually believe that I can get away with eating that piece of forbidden cake!
This last week has been a reminder of just how awful the situation is. I have had a serious flare in symptoms which has led to a succession of sleepless nights. To add to the aggro I have been getting persistent cramp in my legs and feet. To begin with I just thought it was just one of those things, I have flat feet and have been more mobile recently. However it got worse as the days went on and I now spend every night doing the cramp dance round my dripstand while trying not to get tangled!... Hubby is not impressed with my interpretation of pole dancing!
I have been for a blood test today so I hope that explains it and they can sort it out for me! I also saw my gp, he was much more helpful today and actually sat and went through my notes with me (He was way out of date). I explained everything to him, including who is involved in my care and what their roles are. So now we are both working on the same page at last!
We decided that my recent flare in symptoms could be bacterial overgrowth again (SIBO). For once he didn't question me and handed me a script for some Rifaxamine (antibiotic). He also agreed that it looks like something isn't quite right with the TPN, I had seen him last week and he could see the difference in my face. I was in a lot of pain and struggling not to be sick!
The last few days have been a nightmare but hopefully the storm will pass and I will be able to plan some naughtiness soon!
I will update you once I know whats happening.
How are you doing now with the TPN?
ReplyDeleteHi, sorry I don't know your name? settling in to the routine and structure of TPN has been fairly easy and I have had no serious complications or infections so I feel a lot more at ease with it now than I did to begin with. Like everything, it's just an adjustment process I guess. Obviously it's not ideal and I would love to be free from it but it's not as scary as I thought. Weight wise I'm back to a healthy weight and stable now so from that angle it's been a life saver lol. Having said that, I'm still pretty limited and have little energy with some very irritating side effects but anything is better than wasting away.
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